My coeliac and IBS diagnosis story
While I’m here sharing plenty of other people’s diagnosis stories, I realised…I hadn’t actually shared my own. And could I reasonably ask people to be brave and share their lowest ill-health points if I wasn’t being brave too and sharing mine?
That wouldn’t be right now, would it?
So here it is...here are the years (years!) that led to the creation of this diary and tool that I now can’t live without. Buckle in, it’s a bit of a long one!
When people ask me ‘how long were you sick for?’, it’s hard for me to put a specific time frame on it. All I know for certain is for at least two years prior to diagnosis I had felt ‘under the weather’. I had always been a busy person and teenager; I loved being involved in everything. Loved sports, loved theatre, loved hanging out with my friends. Always had a part time job, liked to be doing well in school and Uni. My grandma always used to tell me, “you can’t burn the candle at both ends” but I would always shrug and laugh and say “it’s fine!”
A couple of years after finishing my Masters degree and into my first real jobs, the wear and tear slowly began to show. I was starting to feel constantly tired and run down. I had a lot of general colds, and would without fail get a flu bug that would knock me down for 2 whole weeks every year. I was pale. I started to constantly feel nauseous: like I could imminently throw up. If I ate anything, I was full within two bites and half an hour later I would be so ragingly hungry that I again felt like I could vomit. My stomach was constantly on fire, with a sensation I could only ever describe as “gripping”; all I wanted to do was curl up in a ball and sleep, because sleep was the only thing that took the feeling away.
So, I stopped going out so much. I became quieter, moodier, and getting the motivation to do exercise (never an issue before!) became difficult. This is so much clearer with hindsight; at the time the change was so gradual that I didn’t realise this is how awful things were getting until it all came to a head, because I had tried to force myself to live the busy life I had always lived (including dragging myself through a half marathon).
The GP boomerang
Of course, during this time I was back and forth to the GP. I had several blood tests that showed nothing, and would often be met with little help and perplexed faces. There were times I felt that perhaps the doctors thought it was all in my head, and it wasn’t until several visits in that I was actually offered some form of medicine to help the symptoms: Lansoprazole, when it was thought I may have excess acid. The term IBS came up a few times, but never with any particularly helpful advice, and I knew so little about it that I didn’t understand how that could possibly be what I had, because I thought the main symptom was uncontrollable diarrhea. No doctor corrected this assumption and I didn’t learn that wasn’t the case until a couple of years and some deep Googling later.
In fact, it wasn’t until I saw a helpful locum GP at my usual doctor’s surgery, that I was referred for an endoscopy. Unfortunately the appointment letter arrived in the post after my appointment was passed, and the rescheduled date was far into the future.
The lowest point
The turning point came after a holiday with my husband (then boyfriend) in 2014, and around the time of #EndoscopyLetterGate. We had looked forward to this weekend away in Budapest for months. The night before we left I had a burger…and about an hour later was curled up tight in a ball, bawling. I. Felt. So. Sick. But we were determined to enjoy this time away that we had so looked forward to, and in the morning, I rallied myself and off we went.
Me & my Husband in Budapest while I tried to pretend I wasn't nauseas af.
And the cycle went like this: every morning after some sleep I would feel well enough to get up and go out sightseeing. I would nibble on bread throughout the day because it was a) plain and b) potentially soothing for what I thought may be an ulcer inside my stomach.
Reader, I was very, very wrong.
After eating the bread I’d go rapidly downhill and head back to the hotel to sleep by 5 or 6pm, leaving my poor husband to go eat dinner on his own. Some holiday!
When I got back to the UK I rang my parents (who had been insisting I come home and go see a doctor privately for some months now) and I cried and I let them actually take care of me. What can I say? I’m stubborn…and I’d had genuine faith up til this point that the NHS could fix this. Unfortunately, gut disorders are still difficult to diagnose and a relatively unknown quantity in medicine, and the care people receive in the NHS may not always be joined up.
[With the biggest caveat that I am not a health professional, I just want to throw in here that, having worked for several cancer charities in my career, I feel it’s really important that if ever you feel your symptoms are not being adequately addressed, that you keep going back and insisting on tests and care. This is especially important if your symptoms change: gut symptoms can be indicative of many issues, including cancer. If you’re are worried, please keep seeing a GP or medical specialist]
The gut health questions I hadn’t heard before
This visit to the Gastroenterologist, quickly followed by an endoscopy, were the most enlightening 48 hours I had had in this whole saga. In the pre-endoscopy appointment, I was asked several things by this specialist that seemed to set off lightbulbs in his head, but had never been asked of me before in the whole preceding two years of doctors appointments.
Did I find it tough to put on weight? (Yes, I had been this same weight since I was about 16).
Did I get mouth ulcers? (What?! YES! Every. Week.).
Did I have eczema or hayfever? (Yes, and yes.).
And so on and so on. At the end of the consultation, he said “I’m absolutely certain you’re coeliac, but the endoscopy should tell us for sure.”
Unfortunately it didn’t, and I walked out of the hospital afterwards with a ‘functional disease’ diagnosis* and what felt like the weight of the world still on my shoulders. Looking back now, I realise I had accidentally stopped eating gluten in the lead up – I was essentially just eating rice and veggies and plain meat prior to the appointment – and Coeliac UK say you ought to continue eating gluten right up to being tested for the clearest results.
IBS and coeliac: figuring it out
After the Endoscopy I almost felt like I was back to square one. However, after a bit of a cry, and lots of hugs, I was determined to get a grip on whatever had been plaguing me for the last few years. I was not about to go through life feeling sick as a dog forever.
As the specialist had been so certain I’d had coeliac disease, I thought the first thing I could do was properly cut out gluten and see what happened. I had “tried” to do so before, but all I had actually done was eat fewer bagels that week. I hadn’t actually cut out gluten at all. And if I was going to change my diet, I was going to have to keep one of those food diaries I’d heard about – because if I didn’t write everything down, how was I going to figure this out?!
IBS & coeliac: Recovery
Thankfully within a few weeks of cutting out gluten, my raging, burning nausea subsided…I began to feel like I was waking up from some achey, rubbish hibernation. From my diary I realized my mouth ulcers had disappeared entirely, and only came back when I accidentally ate something with gluten in it (and thanks to writing it down I could always figure out what that was and avoid it in the future).
Other symptoms I hadn’t even realized were symptoms started easing (excessive gas anyone? Whew), and thanks to a referral from the Specialist, I had appointments with an NHS dietitian to go through my food diaries and keep a track on how I was recovering.
Health and Happiness
Getting back to my old self and health <3
A few weeks into my new diet I felt about 80% better than I’d done in years. Within months I was gaining energy back and within a year I felt like myself again. I had never had so much appreciation for that before.
All that time I kept my food diary. If I had bad days, I analysed it until I figured out what was wrong. As my body acclimatised to my new gluten free diet, other irritants became clearer: caffeine, large apples, not getting enough sleep. I had to use the Headspace app to ‘recondition’ my stomach muscles into relaxing now that the nausea had gone (the side effect of walking around with my jaw clamped shut and my stomach muscles clenched for the better part of two years). I tested removing foods and reintroducing them, I searched for fun gluten free recipes, and I healed.
Now I have my symptoms almost entirely under control. Of course there’s always the occasional flare-up, or accidental glutening, but I’ve learnt to be kinder to myself...to give myself time to rest and heal, and to use all the tools I have at my disposal to get better.
And as I used my hand-drawn notebook 'diary' to navigate myself back to health, I looked everywhere for a useful, stylish diary that had all the things in it I needed to record...and just couldn't find one anywhere. I knew there were so many of us out there with these issues and illnesses so - I got busy and created this diary!
Phew! That was epic! If you’ve made it to the end of this blog post, huge well done! Do you have your own diagnosis journey to share? I want to hear! Are you using your diary to get better and to heal? Show us! Tag us on Instagram or email firstname.lastname@example.org.
*After four years of not eating it, my reaction to gluten is now so severe that it knocks me down for a good few days depending on how much I ingest (after a good bout of vomiting or diarrhoea, whoo!), and I am certain had I kept eating gluten before the endoscopy that it would have returned a solid coeliac diagnosis. Because of this I use coeliac as the explanation for other people, because cross-contamination is a no-no and I find people (restaurants in particular!) seem to understand that better when you use the term. No, I’m not trying to lose weight; no, I’m not doing this ‘cause it’s fun – give me gluten, and I’m going to be very sick. Yes it does look delicious, no I can't just 'eat a tiny bit'. Maybe one day there'll be easier ways to diagnose and I'll know for certain, but I know regardless I'll never go back to eating gluten!